Sunday, June 28, 2009

At the risk of sticking my foot in my mouth I would like to say that having a diagnosis on the autism spectrum does give you the a license to purposely act in socially inappropriate ways.

Don't get me wrong, I do believe in accepting and accommodating behavior when a disability gets in the way of normal social functioning - especially if the person does not understand the social context or are otherwise unable to function in the social situation. And I am not talking about the little social niceties, such as making eye contact, talking in an appropriate tone, or even responding when someone is talking to you.

I am talking about outright unacceptable behavior in people who know better.

So, if you can understand the social situation and deliberately choose to act in a way that is outside the norm, you do not get to claim that a diagnosis of autism gives you a free pass. Nor do you get to claim that it is your "civil right" to act outside of societal norms because you have autism.

Autism is a medical disorder, not a civil rights movement.

If you have autism you do have the right to be treated equally and to ask for people to be accepting of the challenges that that you face. You have the right to be treated with respect. This is nothing more or less than the "rights" that everyone is entitled to - regardless of who they are or any medical conditions that they have.

Sadly, there are those who use autism as an excuse to behave badly.

Take for example a recent series of posts on Autisable, starting with a post entitled Neurodiversity Bull that written by someone calling themselves LadyLibellule. It was a well written critique of the neurodiversity movement that was not overly harsh or judgemental..

Of course there were a number of comments from those who were not happy about the post. I am going to point out the comments and actions of one person in particular - not because I have any particular beef with this person but rather because it is a prime example of someone behaving badly and claiming a free pass because of their autism.

This person calls themselves Abiline_piper_lg and seems to be 22 year old high school math teacher (if you believe his profile). He also claims to be an "aspie" although I am unsure of what specific diagnosis it is that he is claiming.

Lets look at some of the comments that he left of the post. I am not going to include the entire text of the comment, just the relevant parts, so click on the links if you want the full context.

I've been the victim of many of her attacks as well, on our local newspaper website. It pisses me off too. I've gotten into it with her. I don't see how she can live with herself honestly. "Lady Libel" is a good name for her too, with as slanderous as she is.

I understand where you're coming from. As much as I hate to use this word, Lady Libel is a "c."

And with that we have gone completely beyond what is acceptable in any sort of civil conversations. It is worth noting that the author of the post did not respond to any of these comments, this gentleman was responding to other people's comments and getting himself worked up.

Now this is a bad enough, but if that was the worst of it I wouldn't be writing about it. This gentleman apparently felt that his comments were not enough, so he wrote a post that was also posted on Autisable called Autisaphobia (Rebuttal To "Neurodiversity Bull") in which he likens disagreeing with the principles of neurodiversity to homophobia -

Autisaphobics display an extreme dislike for Autistic-type people. So much in fact, that they want to force Autistics to conform to societal standards for personality traits. Autisaphobia is similar to homophobia (which involves the extreme hatred of homosexuals and trying to force homosexuals to be heterosexual) in that apparently people with Autism are viewed at as sub-human monsters.

As a society we've become way too judgmental. We judge people by what they look like, what they wear, and still even by the color of their skin. Now we judge people by some sort of medical condition that through no fault of their own they have, yet they've come to accept it and are OK with having it and thus don't want treatment? How about you mind your own business (or, perhaps if that's not clear enough, BUTT OUT) and let us choose how to live our lives!!!!

So this is me, being "autisaphobic" and telling this gentleman that he should be conforming to socially acceptable behavior because he clearly seems to know better. While he certainly has the right to live his life how he wants he does not have the right to call someone vulgar names and suggest that they are "bigoted" or "phobic" or filled with "extreme hatred" because they don't share the same views.

You do not have the right to call people names and accuse them of hate crimes simply they disagree with you and you happen to have a diagnosis of autism.

Wednesday, June 24, 2009

Earlier this week on the Huffington Post there was an the second in a series of articles written by Dr. Harvey Karp about vaccinations. The good doctor's basic point is that that vaccines are "very safe - and super important" and that there is no need to do more research into the subject.

Unfortunately the posts are filled with the same old arguments, the same old misinformation, and the same old "we know what is best" attitude.

Take for example the tired old line that just because some children regress into autism immediately following being vaccinated that doesn't mean the shot had anything to do with it. It is certainly true that just because autism follows a shot that doesn't necessarily mean that there is a relation BUT that doesn't mean by default that any relation is "just a coincidence".

As a matter of fact, some injuries are assumed to be caused by shots if they happen within a certain amount of time after the shot is given - at least according to the Vaccine Injury Table from the vaccine court.

Maybe instead of trying to find a relation in the entire population the approach should be to start with the subgroup who regress immediately following a shot and see if there is anything different about this group ?

Then there is the "asked and answered" style argument that says that "to date, dozens of studies -- examining over 1 million children -- have failed to find any credible association between shots and autism...none!".

This line of reasoning completely ignores the fact that there has been no large scale study that compares vaccinated to unvaccinated children to see if there is a greater risk of problems such as autism in vaccinated children - and if you are looking to see if one thing (vaccines) are causing another (autism) you really need to compare the rates between the groups exposed (vaccinated) and unexposed (unvaccinated).

It would be like saying smoking can't cause cancer because you compared people who smoking 1 pack a day against those who smoke 3 packs and found no difference in cancel between the two groups. Yet when you compare smokers to non-smokers the relation becomes apparent.

If we applied this same argument to other aspects of autism research then we should also stop searching for genetic causes of autism because hundreds of studies examining a huge number of children have failed to turn up any significant association. Yet, because "science" is convinced there is a relation (mostly on the basis of twin studies), the investigation continues.

Finally there is the misinformation and failure to mention certain uncomfortable facts. For instance, Dr. Karp makes a point of how much better the shots of today are when compared to earlier shots -

For example, in 1980, the DPT shot (Diphtheria/Pertussis/Tetanus) was made from a soup of blendarized bacteria (over 1000 different illness particles - antigens - all mixed together). And, the polio vaccine had live virus that actually protected children by triggering a minute case of...polio! Today, our modern DPT vaccine is highly purified, containing only 3-5 bacterial antigens and the polio shot has absolutely no live virus.

But he seems to forget to the mention that the DPT shot of the 1980s had some unfortunate and all to common side-effects, such as seizures and death, and was the reason that the Vaccine Court was created. If you look at the statics published by the court you can see this shot (listed under the heading DTP) has more claims awarded than all of the other vaccines combined.

And the live virus polio vaccine? It is still used in other countries and is actually responsible for outbreaks of polio. As for the scary "live virus" part - the most recent (and most effective) version of the flu shot is the same thing, a live virus.

So if these two shots are the basis for comparison then Dr. Karp is right - the modern cousins to these two look pretty good in relation - but that is only because the point of comparison is so bad.

However, I think the most disturbing idea that Dr. Karp puts forth that is that shots are a civic duty - that you have a obligation to inject your child because it is your responsibility to your neighbors children and society as a whole. This concept that we have to force the most vulnerable members of our society to undergo precautionary medical treatments that have the very real chance of causing them permanent injury just to possibly protect our neighbor's children is just plain scary.

What's next, trying to throw parents in jail for not vaccinating? Oh wait, that already happened.

As I have said before, the core of the current problem is a lack of trust. There are an increasing number of parents who do not trust the medical community when they talk about vaccinations and articles like these by Dr Karp are part of the reason.

It is long past time for this issue to be put to bed. We know that there are some small number of childrenwhoregress after getting vaccinations so the question isn't can this happen but why it happens. Answering this question is not going to be easy but if the medical community wants to regain the lost trust, they are going to have to find the answer.

This article is about a recent study that shows that "many parents misinterpret common baby behaviors as milk intolerance and needlessly switch formulas without consulting a health professional". The study compared two different types of formula, one with intact cow milk protein and another with partially hydrolyzed cow milk protein and found that there was no difference in infant intolerance between the two and hence there is no need to switch.

Doesn't sound to bad, right? Well, something seemed a little strange to me so I found the actual study here and looked at who the authors are. Three of the authors in of the study list their associated organization as Mead Johnson Nutrition. That name was also mentioned in the Science Daily article but I was not familiar with it, so I googled it and found -

Mead Johnson Nutrition helps moms make sure those babies grow up healthy. The company specializes in making nutritional products for infants and children. The company distributes its offerings in the Americas, the Asia/Pacific region, and Europe. Mead Johnson's most visible consumer brand is the Enfamil line of infant formulas.

So this company makes an infant formula, this is starting to make sense. I wonder what formulas they compared? Looking at page 6 of the study and I see that the full protein formula was Enfamil LIPIL and the other one was Good Start Supreme made by Nestlé. So what we really have here is a "study" showing that a competitor's specialty product is not any better than one made by the company performing the research.

While this fact does not necessarily invalidate the results of the study is it a huge source of potential bias and as such should be disclosed as a conflict of interest. If you look at the article on Science Daily the only hint of the bias is the company name and if you look at the abstract for the study there is no hint of the bias. If you read the study itself the bias is hinted at in the competing interests section but is never spelled out directly.

Welcome to the future of research, where the results of the study will be a message from the sponsor.

Saturday, June 20, 2009

Some days it doesn't pay to read anything online. I ran across this post written by Jonathan Mitchell at Autism's Gadly. Mr. Mitchell is, for those of you who do not read his blog, at adult with autism who writes about issues surrounding autism and, while I do not agree with everything that he says, I do think that he makes a lot of good points and is worth reading. But I digress.

His post was a rebuttal to something posted at autistics.org that was targeted at him specifically. I was intrigued so I went to read the original post here. I wish I hadn't.

The title of the thread is "Autism Suck-ups" and was written by someone calling themselves "Sadderbutwisergirl", it starts out with -

Have you guys ever heard of curebie autistics? Personally, I hate it when they spread around the drivel of hate groups such as Autism Speaks and so I've put up a special place to complain about them and (the following is optional) put them in categories based on this criteria. I'm going to start off by complaining about Jonathan Mitchell. It sickens me how he says...

The post then continues in an attempt to dissect statements Mr. Mitchell has made with some, well, interesting results. For example, on the problems living with autism?

He blames his being autistic for all of his problems and doesn't consider that the problems may be due to discrimination rather than the fact that he is autistic.

Self-injurious behaviors?

I can come up with an easy answer for that one: If society is changed, people won't see the need to dope them up with behavioral meds and do all kinds of psychologically harmful things to them to get them to stop them from banging their heads. ... Whenever I catch her trying to headbang, I just turn her face so that she is looking towards me and tell her "no." I then give her a hug to make her feel better...

On wanting people with autism to be able to talk?

There we go again with the disgusting crap about how only "a normal speaking person" deserves to be emulated. This destructive drivel has been the justification for the harm of so many autistic persons.

While it is not possible to confirm that Einstein, Jefferson, and Newton were autistic after they ve been dead for so long, they do have some autistic traits and you can't really confirm that they were "normal" either, so shut your trap.

The most disturbing statements come later in a later post in the thread by the same author -

I find it to be really disturbing that he is spreading the idea that the autism community's problems are caused by the fact that they're autistic and you're right. He is wrongfully removing the blame from the neuromajority supremacists to fix the problems that they created. That would be like a Nazi Germany-era Jew obstructing any anti-Nazi resistances, saying that the Nazis are only trying to help the Jews by exterminating them, giving money to Nazis in the upper echelons because he considers them to be his friends, joyfully going to the concentration camps, and gleefully jumping into the crematorium. If there are any Holocaust survivors reading this and feeling appalled, I apologize, but I'm trying to prove a point here. The Nazis weren't trying to help the Jews at all. All they were doing was depriving them of their civil and human rights and ultimately their lives systematically. To me, an autistic person spewing this kind of crap out of their mouths is just as strange, disturbing, and sickening as the example of the Jew happily accepting the atrocities that the Nazis have done to him.

I am sure that most people reading this can see the insanity of the statements above.

The problems experienced by individuals with autism are not due to a systematic discrimination in society but rather because autism is a profound disorder. (Although society as a whole does need to learn to tolerate and accept what comes with autism).

If your child has self-injurious behaviors they most certainly don't stop just because you tell them "no".

Being able to talk or communicate effectively is not an optional skill for surviving in the world, especially if you want to be able to live independently.

I don't think that anyone who lives with autism on a daily basis really cares whether Einstein had autism.

And most importantly, people with autism are not a persecuted minority nor is there even the slightest relation to the horror that Jewish people experienced in Nazi Germany.

Autism is not about civil rights, it is about treating a serious disorder.

So who would such inane things and spout such nonsense? If you click on profile for "Sadderbutwisergirl" you see that this person is a 15 year old girl. Assuming that the profile is correct, these are some rather extreme views for someone so very young. I have to wonder if her parents know what she is doing online.

I think it is obvious that someone who is 15 is unlikely to come up with this stuff on their own; they have to be parroting what they have heard or read elsewhere. I guess the new slogan for neurodiversity is to get 'em while they're young and hook 'em for life.

So I guess I am a little confused, is neurodiversity about acceptance or is it a cult?

I ran across an interesting post at a blog called Good Math, Bad Math. Normally this blog is about math and computers but in this case the author is writing about the stigmas attached to mental illness from a personal perspective. The illness in this case is clinical depression but I think what is his saying would apply equally to autism.

The text of the study is now freely available from pubmed central so go read it if you are interested.

The researchers in this study were investigating whether Smith-Lemli-Optiz Symdrome (SLOS) is more common among individual with autism than in the general population. SLOS, as I have written about before, is a generic disorder where the body is unable to produce enough cholesterol which causes a wide variety of problems, including autism. Earlier research had demonstrated that autism is very common in individuals with autism so the researchers were looking into whether SLOS was a common cause of autism.

The study selected 100 samples from children contained in the Autism Genetic Resource Exchange (AGRE). These children were from families with 2 or more children with non-regressive autism. Blood samples for each of the participants were analyzed for cholesterol level and all cholesterol precursors.

None of the samples had indications that the individuals had SLOS.

However, 19 of the 100 individuals had total cholesterol levels less than 100 mg/dL, which is very low. There were also indications that the lower level of cholesterol in this subset was due to problems with the body's process of making cholesterol rather than a lack of dietary sources.

To put this cholesterol level in perspective, the normal average total level should be in the range from about 160-200, depending on age, sex, and other factors. If you look at data published by the CDC that is referenced by this study this level is in the bottom 5th percentile for children (ie over 95% of children have a higher level with the average level being 60% higher).

The study concluded that although autism is very common in individuals with SLOS that SLOS is not a common cause of autism. But, and this is the interesting part for me, the finding that about 20% of the sample had a very low cholesterol was not expected and the researchers suggest that further research is needed.

Sunday, June 14, 2009

Newborn babies have immature immune systems, making them highly vulnerable to severe infections and unable to mount an effective immune response to most vaccines, thereby frustrating efforts to protect them. [...]

Researchers at Children's Hospital Boston believe they have found a way to enhance the immune system at birth and boost newborns' vaccine responses, making infections like respiratory syncytial virus, pneumococcus and rotavirus much less of a threat.

Ofer Levy, MD, PhD and colleagues in Children's Division of Infectious Diseases have shown that the newborn immune system functions differently than that of adults, but that one portion of the immune response is fully functional and can be harnessed to boost innate immunity in these tiny infants.

I am sure that these scientists have good intentions but the road to a certain very hot place is paved with those. If a critical system in your body is still immature and developing why would you want to risk causing life long problems by messing with it?

Thursday, June 4, 2009

Well, this has been a fun week. We had our youngest daughter evaluated because she has not been talking as much as she should be and had a few other behaviors that were worry some. What we were hoping to hear is that she had a speech delay and that some other parts of her development were abnormal because of exposure to her sisters.

No such luck. Our third child was diagnosed with (mild) pdd-nos.

The good news is that she is already, at a little under 2 1/2 years only, further ahead in some areas that her sisters who are 2 years older (and her sisters are still relatively high functioning). She can talk and will use some small number of works appropriately, her social skills aren't that far behind where they should be, and her repetitive behaviors (if that's what they are) aren't too dysfunctional.

The bad news is that she is on the spectrum when we were really hoping that she was going to avoid it.

Wednesday, June 3, 2009

I no sooner get done questioning the initial post on the blog of the Autism Science Foundation and they go and do it again. This time the post in question is a repost from something called the "The Health Care Blog" written by someone named Val Jones, M.D. I have never heard of her before so I don't really have much to say about her but the the new post -

is yet another attack post - only this time the target is Jenny McCarthy. So far this new blog, which appears to be an official communication channel for the ASF, has been used for nothing but attacking people.

The focus of the blog doesn't seem to be on the ASF itself or even related to it. Maybe they should be talking about the goals of the foundation and how they hope to reach them? Or perhaps discussing the research that they are trying to fund that will make a difference in the lives of people with autism?

The Autism Science Foundation has started a blog. At least I am guessing that it is their official blog because it is mentioned on the front page of the organization's site -

Autism Science Foundation Launches New Blog

Join the Conversation! http://autismsciencefoundation.wordpress.com

I went to look at the blog because I was curious what this new organization has to say for itself. I had thought that it would be some press release type of thing or some reiteration of what the foundation hoped to accomplish. Or maybe even something about the first and only event that the foundation has sponsored.

I was so very wrong.

The first post on this new blog is an attack on Sharl Attkisson who is a reporter from CBS. Ms Attkisson had recently reported on some of the potential problems with Risperal when it is used in the treatment of autism. From the opening sentences of the post -

Reporter Sharyl Attkisson has had some outrageous pieces on the CBS Evening News, but her story Sunday night about risperdal has to be the most desperate. Apparently ridiculing the life-saving value of vaccines is not enough, and she has now moved on to poo poo the only drug FDA approved for children with autism, because, tragically, a handful of children experienced a well known, but highly unfortunate side effect; increased level of the hormone prolactin.

it was clear that this was going to be a fair, balanced, and most importantly, scientific retort to the information in the CBS report. After all, isn't part of the mission of the foundation that they will adhere "to rigorous scientific standards and values"? And what is a higher scientific value than calling a journalist names and calling their reporting "desperate" and "outrageous"?

Oh wait, that doesn't sound right.

I have to wonder if this post should be taken as an official statement from the ASF since they appear to have sanctioned this blog by linking to it from their site? Or is this what it appears to be on its face - a personal rant written by Alison Singer, the founder of ASF. Either way you slice it the ASF has PR problem in the making.

Can anyone imagine Autism Speaks putting something like this on a corporate blog?

Tuesday, June 2, 2009

If you look at the about autism page on the site for the Autism Science Foundation you are treated to what the foundation feels is important to know about autism. Given that this is a "science" organization you would think that the information would be the best that science has to offer but that doesn't seem to be the case.

It starts out with the standard boilerplate about the three core deficits and the fact that autism is more common in boys than girls. Then there is the language about how we know autism is a genetic condition because of twin studies and blah, blah, blah.

Then we hit this part about the different types of autism -

There are five Autism Spectrum Disorders, sometimes called Pervasive Developmental Disorders (PDD):

Notice the word that I highlighted - delay. The term PDD-NOS has a very specific meaning and it isn't "pervasive development delay" - it means "pervasive development disorder". I thought that was a very curious mistake to make until I kept reading.

Continuing on the page you find the a section on how autism is diagnosed with the normal lip service to early diagnosis and intervention and a section on how common autism is with the typical reference to the trinity of denial.

Then you get to the meat of the page - what the ASD feels are appropriate treatments for autism and what they feel are inappropriate. In the appropriate or "evidence-based" treatments you find -

Applied behavior analysis (ABA)

Occupational therapy

Speech therapy

Physical therapy

In the inappropriate section entitled "Beware of Non-Evidence-Based Treatments" you find the following -

Chelation

Lupron protocol

Hyperbaric oxygen therapy

Gluten Free-Casein Free (GFCF) Diet

Stem cell therapy

This inappropriate list is an strange grab bag of alternative treatments. None of these treatments except HBOT have much in the way of any evidence either for or against them - HBOT actually has some evidence showing that it does work. And I know from my own personal experience that the GFCF can make a huge difference in children with autism. But I digress.

But getting back to the usage of "delay" - I found this section on recovery in the "appropriate treatment" section -

Some service providers, celebrities, parent groups and medical practitioners may talk about “recovery” from autism. “Recovery” is a subjective term, and what one family calls "recovery" may be different for others. Parents should be skeptical of any health care provider holding out "recovery" as an option, as it often leads to expensive and ineffective treatments that can burden families with needless debt. Remember, autism is pervasive developmental delay, which means children will continue to develop, learn, gain skills and adapt as they age. Sometimes children lose their diagnosis altogether, leading to claims of recovery. Keep in mind that symptoms of autism change as a child develops.

And now the use of the word "delay" makes sense. The ASF appears to be pushing an unconventional view of how autism progresses in an attempt to defuse the whole "recovery" debate. They are saying, in effect, that even if a treatment appears to "recover" a child that it probably wasn't the treatment but rather the normal growth and development of the child that was responsible. After all autism is a "delay" and not a "disorder" - and that which is delayed may still come to pass when something that is disordered might not.

What they are saying is true, after a fashion. Almost every child with autism will progress on their own as they mature and grow older and the symptoms of autism will change over time. But that is a long way from the the implication that alternative treatments have no effect and precious few children with "lose their diagnosis altogether" simply as a function of aging.

Monday, June 1, 2009

Last month a new autism research organization was formed called the Autism Science Foundation (ASF). This organization was founded by Alison Tepper Singer after she left Autism Speaks with other refuges from Autism Speaks as well as the illustrious Dr. Paul Offit.

As I have written about before the goals of this organization seem to be rather particular. The main goals of the organization seems to be to fund the "right" scientific research into autism and to make clear that vaccines have nothing to do with autism. I always thought that scientists were willing to go where ever the data took them regardless of whether they thought they already knew the answer - but what do I know.

The ASF seems to be attempting to become a mainstream organization and appears to have the long term goal of replacing Autism Speaks as "the autism organization". So far they seem to be off to a rather rough start.

Take for example the situation with Alison Tepper Singer when she abruptly resigned from her position at Autism Speaks because of a disagreement on an upcoming vote on the IACC.

First, it is still a mystery how she knew about the vote being scheduled the next day because the other public members did not know anything about it. Nor should there have even been a planned vote that was organized outside of the normal structure of the committee.

Second, Ms Singer chose to announce her resignation via a press release from Every Child By Two, which is a prominent pro-vaccine organization. The announcement was released on the same day that she resigned which makes it appear that her resignation was not a spur of the moment decision but rather a pre-planned event.

If that was not bad enough Ms Singer decided to hang onto her seat on the IACC after her resignation; a seat that she had only because of her employment with Autism Speaks. She is now using this seat to represent the new ASF.

Given the fact that this is a brand new organization that does not yet have any real sort of presence or authority on the issues surrounding autism it is a mystery to me why Ms Singer feels that it should have a voice in the national plan for autism. If this new organization wants to be included in the national plan perhaps they should take the time to do the work to get there on their own without stealing from the hard work of others?